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Article: Dr. Friedberg Interview - Living Skillfully and Making a Difference With ME/

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 19, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Recovery Soon

    Recovery Soon Senior Member

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    Great interview Cort. The questions were perfect. I wish he would have elaborated on whether he believes that emotions are the cause of CFS.

    Everything he is saying here is why, in my opinion, the Gupta Program is effective. And it is also why people do not seem to get cured by Gupta- this meditative, balancing, positive lifestyle approach is effective for ANY chronic illness. The fact that these drastic measures do not cure the condition clearly indicates that the origin is not solely rooted in an unbalanced lifestyle.

    As an example, his meditation routine is tame compared to mine. I meditate for 45 mins every morning- 30 mins in the evening, and at least once a year attend a 7 day silent meditation retreat, where I am meditating from 5AM to 10PM ever day. If an unbalanced lifestyle or mind was the cause of his condition I would have dropped CFS about 2 days into my first retreat. Similarly, he has claimed to live in a perpetual state of peace, which again shows us that stress does not cause this disease. Having a Psychologist attest to this is obviously valuable.

    The only discouraging part of this interview was the following:

    "Do you see a quick and effective solution for ME/CFS/FM appearing anytime soon?"

    "No I don’t see a quick solution to these illnesses right now. My guess is that any new effective treatment will require lifestyle adjustments to get the best result. This is what you have with any number of chronic conditions. For instance, medical treatment for heart disease still requires healthy habits to get the best outcomes."

    HIV patients haven't meditated themselves healthy- they have ARV''d their way to health. This answers suggests to me that he is down on XMRV as a viable cause/cure.

    Thanks for this. Great job.
     
  3. Cort

    Cort Phoenix Rising Founder

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    This really reflects how I feel. We're basically caught with the 'half a loaf' or quarter or 1/8 loaf approach and these things do help - particularly as he noted the wired and tired group or stressed group - which I fit into - but which, for me, only work so long as I stay within my limited confines....walk a bit too far - and I'm back in the soup; stay within my energy envelope and they help. This is quality of life stuff and QOL is important.

    Gotta make clear that this interview was pre-XMRV; I have no idea how he feels about XMRV's prospects for curing or helping CFS. My guess is that he was excited as the rest of us - I don't know why he wouldn't be.
     
  4. Cort

    Cort Phoenix Rising Founder

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    I would be very, very (very) surprised if he thought emotions are the cause of CFS. He is, after all a psychologist who would presumably notice if he was having some strong emotional problems. I think he's clear, though, that once you have ME/CFS - that negative emotions impact it -which fits with my experience - and the flip side, which is not really recognized, that positive emotions can provide some relief.

    He was clearly a somewhat driven, high achieving individual - doing alot of research, running long distance (not short distance) - and I think he thinks that this drivenness, in retrospect, even though drivenness is hardly uncommon in our culture - contributed to his getting ill.

    I have mixed thoughts about that.....there are so many people working really hard in our culture....
     
  5. KC22

    KC22 Senior Member

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    Cort - Great Interview!!! I thought your questions were well thought out. I could see his thinking and believe it can help, but not cure, as he says.

    Also, he keeps referring to managing stress in our lives. Some of our stress is not coming from us, but in our lives. The loss of my husband this summer is an example. I have no control over this and I am sure it is affecting my health. Others have their own stressors that are not in their control.

    It takes great fortitude to manage the natural ups and downs of this disease and maintain a joyful outlook on life. While it is very helpful to meditate, pray, etc., it doesn't take care of the viruses, etc. that are plaguing our bodies. They are still there, just like HIV, cancer and heart disease patients. I do believe in having as positive of an attitude as possible, but so far for me, it has not allowed me to play volleyball or even come close.
     
  6. Cort

    Cort Phoenix Rising Founder

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    Tell us what you really think being! :cool:. My experience is that some degree of wellness is really helpful and may even be necessary to really benefit from these practices. For instance, even though I am much better off than most - I find them much more difficult to do until later in the day when my energy naturally rises for some reason - having energy is important. Dr. Jason's study suggested that people with low cortisol may not benefit much for instance as well.

    In his defense he did say this with regards to the very ill

    It sounds like a) he has not worked with many people who are homebound as you suggested - ie he is working with a higher functioning group and b) that the results with really severely affected people are limited - he says 'some' people do improve and, of those that do, they show 'modest' improvement in functioning...
     
  7. Cort

    Cort Phoenix Rising Founder

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    Actually, for me its often the little day by day stressors that knock me for a loop. Honestly it is not the worry about CFS that gets me - its the little things that crop up through the day. Fore me actively seeking out pleasure - and staying away from resentment. frustration and worry - so much of that in many of our lives - actually does help.

    Yes, some volleyball would be nice!
     
  8. Recovery Soon

    Recovery Soon Senior Member

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    Ah yes. Forgot to read the fine print. Would love to hear his updated opinion.
     
  9. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    This book sounds like it might be very helpful for those who are pushing too hard, trying to live beyond their physical ability. But for some of us who can't even imagine sitting up in a chair watching people play volleyball or being able to focus even 5 minutes to meditate or pray, it feels like another "you can control what's happening to you" lecture. When you don't have the breath to talk, being social isn't much of an option. I hope this doesn't sound too negative- we are all at different places and need different things. It just makes me feel further like an alien when I hear that if I just did a,b, or c, I could get better.:confused:
     
  10. Cort

    Cort Phoenix Rising Founder

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    The Interview was in 2008 but the first part was published sometime in 2009
     
  11. Cort

    Cort Phoenix Rising Founder

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    I agree - we are at alot of different places (what makes CFS so much fun :rolleyes:) Maybe it's best to view his recommendations like any other treatment - they will apply to some people and not to others. You wouldn't take Vistide if you didn;'t have an infection; if the shoe doesn't fit don't feel bad about not trying it one. Hope you feel better!
     
  12. Carrigon

    Carrigon Senior Member

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    To me, it sounds like he's saying, if you just think happy, happy, joy, joy thoughts and you pace yourself, you too can be cured. Doesn't work that way for those of us who have this severe. We have tried meditation, biofeedback, pacing, you name it, we've done it. Doesn't work. There is a biomedical reason we are sick and it cannot be cured with happy, happy, joy, joy thinking. Yes, your quality of life can improve if you don't push it. But that's about it.
     
  13. Cort

    Cort Phoenix Rising Founder

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    Where does he say 'if you just think happy, happy, happy, joy, joy thoughts and you pace yourself, you too can be cured".

    Not here

    Not here

    Here's more about quality of life. Where is the promise of a cure? Maybe it's here

    Nope - not there..25 percenters???
    Here?
    He's not talking about a cure - he's talking about improving ones quality of life in the absence of a cure. He is making the claim that there definitely are things you can do to increase your quality of life and they don't only involve pacing.
     
  14. Cort

    Cort Phoenix Rising Founder

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    At least for me it does help my quality of life to consciously redirect my thoughts away from resentful, angry worrisome thoughts - which I have discovered - some what to my dismay - I am full of -t to more, yes, joyful and positive frames of mind.

    That kind of constructive re-altering of the way I think - or at least the direction that I think in - is something that's rarely done outside of spiritual practices and, so far, as I can tell - is actually at the core of spiritual practices.

    I worry about that being devolved or mixed up with the idea of a 'cure'.Thats what tends to happen when you talk about stuff like that - but nobody is suggesting that. This is an entirely different endeavor. I will be blogging on my 'spiritual' efforts from time to time.
     
  15. Recovery Soon

    Recovery Soon Senior Member

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    This mixup, in my opinion, is at the heart of the CFS is in Your Head conundrum. Given the complexity and perplexity of the wide range of CFS symptoms and abnormalities, the CDC and medical profession had to point to the only thing that could actually offer some modicum of benefit- the mind/body connection.

    Things went south, again in my opinion, when they extrapolated the positive benefits of lifestyle treatments to suggest a causative relationship- in other words, the same people who are telling us now that correlation is not causation forwent this same scientific tenet in attempting to simplify our complex illness.

    The mind/body approach is wonderful for ANY Chronic Health condition. The benefits might be more pronounced with CFS because of the stress abnormalities- which may not be found in other Chronic conditions.

    MBSR has treated every condition known to man since 1978 with success. It doesn't CURE anything- but if you change how you relate to pain and illness, that act in of itself is healing.

    So to those who outright dismiss such advice, I would kindly offer that you are wise to remain vigilant against easy sounding treatments, or a diminishment of how serious your illness is perceived to be by the public and medical profession.

    But you would be just as wise to open yourself to the possibility that practices such as meditation can offer you SOME degree of relief. If that relief is simply your attitude towards being sick- than that would be a major achievement.
     
  16. Snow Leopard

    Snow Leopard Senior Member

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    Apart from the common sense provided, this is mostly a non-solution.

    I agree that managing activity and rest levels more effectively within ones "energy envelope" (a term from Dr Jason's recent paper) will provide some relief from symptoms and allow for slightly higher activity levels. But this does not result in major changes in underlying physiology and the effects can be quite disappointing for those with a small "energy envelope" to start with.

    Secondly, there is little objective evidence to suggest that stress is a major factor in maintaining or increasing the severity of CFS symptoms. The problem with these studies is they are (a) based on anecdote or questionnaires (questionnaires are inherently nonspecific) or (b) poorly controlled for factors known to impact stress response, such as employment and waking time. In fact the evidence suggests the opposite - lower expression of salivary cortisol (or UFC, for that matter), is found in healthy patients on days of leisure and presumably more so during vacation time. This suggests, that patients, at least those in the studies are already adopting low-stress lifestyles.

    I suggest this is due to the fact that the CFS patients in question have greater functional disabilities than the FM patients.
     
  17. Nielk

    Nielk

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    "This is another critical point. You can definitely improve with lifestyle change, not just cope in a defensive way with unpredictable fluctuations in your illness. I think it is possible to approach near-recovery or wellness by arranging your life so that you allow yourself the time for adequate rest, relaxation and sleep, positive low effort experiences, full expression of emotions, and good social support. Almost anyone who follows these lifestyle guidelines can improve noticeably and sometimes very substantially. "

    I agree with the others that he is targeting high functioning patients.
    Instead of running which he used to do before the illness, now he can only play volleyball. Are you kidding? If I could play volleyball I
    would consider myself cured!

    With the above mentioned statement, he is saying that what I am doing right now, should result in remarkably positive outcomes.
    I must be doing something wrong in that this doesn't work for me. (my Fault?)

    I think, Cort, that your interview was excellent and maybe people who are mildly affected by this illness may achieve success with
    what he promotes.(although there's nothing new here that we haven't heard before.

    For the critical patients, it's an insult. There is nothing we can do but rest and pace. Our bodies won't allow more. Just wishing the illness away
    doesn't work. I did a trial of 1 and it didn't work.
     
  18. Cort

    Cort Phoenix Rising Founder

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    Personal experience suggests to me that stress is a very important part of CFS. That's for me, and may not apply to other people but it's really clear to me that my system is really easily perturbed by even small stresses; what I mean by this is that small (or large) things cause my breathing rate to increase, my muscles to tense up, for pains to start showing up......All you need is increased CO2 levels in the blood to start causing problems - that can be caused by more rapid or shallow breathing (I am not saying CFS is caused by increased blood CO2 levels)

    With regards to objective evidence - I'm thinking more of research evidence and on that end - there are all sorts of indirect or direct indicators that the stress response system is not working well. They include the HPA axis findings (low cortisol), heart rate variability findings- which are among the most consistent in CFS which indicate a predominance of sympathetic nervous system (fight or flight) and reduced parasympathetic nervous system activity (rest and digest), increased levels of neuropeptide Y -which Dr. Klimas believes may be caused by immune dysfunction, the increased prevalence of POTS ( due to autonomic nervous system problems) - even the high rate of onset triggered by infectious mononucleosis - probably by EBV - which Glazer's study have shown is activated by stress. You could even maybe even throw natural killer cell problems in there - since of all the immune cells they seem to be most perturbed by stress.

    You could even conceivably throw in the circulation - which is largely a function of the autonomic nervous system - which is one axis of the stress response. You might even be able to throw in the diastolic heart problems; Dr. Cheney thinks they are mitochondrial in nature but researchers are focusing more on the ANS.

    How does the immune problem connect with the 'stress abnormalities'. Actually it lines up very easily in CFS. Both axes of the stress response: the HPA axis and the autonomic nervous system regulate the immune response and the abnormalities in both tend would tend to push the immune system to Th2 functioning - which is exactly what we see in CFS.

    I am leery of the idea that people with CFS were hard-drivers who were undone by their stressful lifestyles - but afterwards - yes, I think that whatever happened - really affected the stress response which means the immune response as well. It's probably, as Dr. Klimas suggests, the other way around as well - or both! immune problems effect autonomic nervous system functioning as well. Nobody knows where it starts or ends.

    This is not to say that CFS IS a stress response-immune (ie an NEID) disorder but it's in there; how much of a role it plays only time and research will tell.
     
  19. Cort

    Cort Phoenix Rising Founder

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    I don't think he means to be insulting to the lower functioning patients. He was pretty clear about the modest and uneven results for really,really ill people who try this stuff and he does not state 'remarkably positive outcomes' should accrue to everybody. He does suggest that a subset of patients - those who feel their stress levels are high can improve noticeably; no panaceas - no cures - just increased quality of life.

    I agree that the lower functioning patients are often left behind by treatment discussions of any kind; that's why they are lower functioning - nothing seems to work and that's rough.

    With regards everybody already trying this - I just don't buy it and the reason is that after 30 years I certainly didn't. No way did I ever try to create more positive conversations or try to consciously create more joy in my life - I didn't even conceive that kind of thing was possible. I felt you were either happy or you weren't - and that was it and I think that's the way our culture generally thinks that issue.. I don't think he explains very well how to do that - although ultimately it is quite simple. I know doing that sounds silly - it sounds silly when I look at what I wrote but in the context of a body that tends to erupt when things go negative, and there are lots of reasons for things to go negative - it makes some sense.

    I still over do it regularly. I engage in activities that send my heart racing and muscles contracting etc. REGULARLY........

    I think true lifestyle change is difficult and it takes remarkable persistence. It's not all about pacing for me - pacing comes first, for sure, but it's about doing what I kind to put myself in a situation where my body can relax...That is my key problem - my body does not seem to want to settle down. It feels like it's burning about 10 gallons of diesel an hour.

    I realize that there are other people for whom their body is 'too settled down' - there's almost nothing left in the tank - they don't seem to have the energy to create the tension I experience. I don't know if that's just on the other side of what I have or something else entirely but it's a different problem and he does note that his ideas work in people who feel their bodies are in a state of stress.

    I say take what works and ignore the rest! :)
     
  20. Recovery Soon

    Recovery Soon Senior Member

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    I just got back from a workshop with Rick Hansen PHD, the author of Budda's Brain: The Practical Neuroscience of Happiness, Love and Wisdom. The book is at the cutting edge of neuroplasticity, and shows compelling data for how we can change the wiring inside our brains through contemplative practices.

    At one point he mentioned that cytokines can severely affect mood states- which connected many dots for me. When I am in a very bad crash- and I feel strong inflammation in the head, or Brain Fog- it is often accompanied by a violent rage, which can last for days. What makes this very alarming is that my moods are generally in check from the daily meditation practice- and there's no logical reason for such a drastic mood spike out of the clear blue sky.

    The Cytokine example seemed to explain a lot to me.

    At the break I brought this to his attention and he seemed to agreed. Of course, it also seems to to argue that stress is the result of, and not the cause of CFS. I plan on following up with email to pick his brain on the Amygdala theory and anything else I can think of.

    I agree. I think Dr. Friedberg's piece was intended to offer as much help as he could with what has shown personal value for him. You can't really fault the guy for that, or ask for much more.
     

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